Have you or someone you love just been diagnosed with cancer and you have no idea what to do?

I’ve Just Been Diagnosed And Have No Idea What to Do or Where to Start

I hear you, friend. As a two-time survivor of a rare form of ovarian cancer, I GET IT.

Your mind is a blur. Or a blank. Your adrenaline is pumping and thoughts just won’t settle. The temptation is to do whatever the first doctor who said the word, “cancer” to you suggested and start FIGHTING THIS THING.

You’re not wrong.

Time is of the essence and whatever doctor gave you the cancer diagnosis may be a good place to start if he/she is highly qualified, or referred you to doctors or hospitals that are highly qualified. Your doctor may even have already checked with your insurance company before making that referral. (Kudos to them if so.)

I can see why you might just say, “Okay, let’s do that. I’ll do whatever Doctor so-and-so said.” Not only do you want to trust your doctor, it can feel like too much work and complication to seek out multiple opinions and conduct research, particularly if you’re worried about time.

Buuuuuuuut, you always want to make your own decisions. Take as much control as you can when life feels out of control.

If you have time (and I know you may not… I barely did), it’s a good idea to seek multiple opinions. I had one doctor—my OB/GYN suggest one thing but I disagreed. She wanted me to get another image and I thought I needed to go to surgery. So I got an appointment within days with a top gynecologic oncologist at a top cancer center and he thought I needed to go to surgery. I chose to follow his option in and was in surgery three days later. That was a WHIRLWIND. Many cancer patients will have longer than a week to seek out opinions and make decisions even when time is of the essence.

Some suggestions for where to start:

1.) Contact your insurer. They should have a “patient navigator” or “concierge” who will almost always be a nurse, to help you find doctors within the network and secure referrals (if needed) and appointments. In addition, they should be able to help you get a second opinion. It’s always a good idea, if you have time, to speak with several qualified doctors/hospitals before starting cancer treatment, which is often costly and invasive. In fact, insurers may require that before covering certain treatments.

2.) Second opinions. Even if you don’t go through your insurer for a second (or more) opinion, you can get one for free from some of the country’s leading hospitals. You can also contact free services outside your insurer to help you navigate getting a second opinion. “BUT, BUT…” you may be thinking, “even if I get one, I have no idea how to prepare for or think through a second opinion.” I get that too. The American Cancer Society has a great overview.

One thing to make sure you DON’T worry about is offending your current doctor(s). Any doctor who discourages you from getting information to help make better choices that work for YOU is not a professional I’d work with. Information is your best way to to feel as good as you can about your decisions. It’s your right to inform yourself and your doctor should be comfortable with it or even encouraging.

3.) NCI Designated Cancer Centers. While you may take referrals from your doctors or insurer and find care that you’re happy with, you may also want to review the list of National Cancer Institute Designated Cancer Centers. These 72 hospitals have been identified by the federal National Institute of Health’s National Cancer Institute as demonstrating excellence in the diagnosis and treatment of cancer. They are deeply experienced, engage in cutting-edge therapies, and conduct research such as clinical trials.

Keep in mind that your insurer is NOT LIKELY to suggest you go to a doctor or hospital that is not covered by your current plan. But it may be that the doctor or hospital with the most experience with your cancer… the ones you think you want to help you… are outside your plan.

You might decide to change your insurance to see those doctors/hospitals (I have a family member who did this to go to Moffitt Cancer Center in Tampa, FL and was very glad she did.) Again, everyone’s journey and choices are individual, but if you want to shop for high-quality providers of cancer care, this list is a great place to start.

Statistics show people visit an average of FIVE WEBSITES when shopping for FURNITURE.

This is your LIFE. If you have the time to comparison shop for doctors and hospitals with an approach and experience that you feel good about, DO IT.